Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:You don't understand her point. OP doesn't seem to want to be seen in the same class of kids as SN kids so PP is pointing out that, in fact, her kid does have SN. Because you know, medical SN are a better class of SN than developmental ones. Gosh, you don't want to be mistaken for one of those kids.

You need to grow a thicker skin and not take offense when none are intended. Nowhere does OP indicate that medical SNs are a "better class" than developmental ones just that her kid has medical SNs which is a fact.

- signed mom of kid with developmental delays.

Different poster. When a mom comes on this board and says:

SWS is so rare and I get excited to know of a person with SWS who says something like "I never considered having SWS as having special needs at least for me." I hope my dd grows up with the same attitude!

I think that by definition she is pretty much taking a dump on the entire notion of special needs. So yes, offense taken here.

I am the PP who has SWS. I've lived with it my whole life and I never considered it to be SNs for me. So having that attitude is "taking a dump on the entire notion of special needs"? Maybe you'll feel better if I wallowed in my disability and felt sorry for myself?

No, they would feel better if your *parents* wallowed in self pity and felt sorry for themselves, since that is apparently the only way to be a "proper" parent of a child with ""proper" special needs.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:You don't understand her point. OP doesn't seem to want to be seen in the same class of kids as SN kids so PP is pointing out that, in fact, her kid does have SN. Because you know, medical SN are a better class of SN than developmental ones. Gosh, you don't want to be mistaken for one of those kids.

You need to grow a thicker skin and not take offense when none are intended. Nowhere does OP indicate that medical SNs are a "better class" than developmental ones just that her kid has medical SNs which is a fact.

- signed mom of kid with developmental delays.

Different poster. When a mom comes on this board and says:

SWS is so rare and I get excited to know of a person with SWS who says something like "I never considered having SWS as having special needs at least for me." I hope my dd grows up with the same attitude!

I think that by definition she is pretty much taking a dump on the entire notion of special needs. So yes, offense taken here.

I am the PP who has SWS. I've lived with it my whole life and I never considered it to be SNs for me. So having that attitude is "taking a dump on the entire notion of special needs"? Maybe you'll feel better if I wallowed in my disability and felt sorry for myself?

This is a reductio ad absurdum, and I think you know it. I don't play the stupid game.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:You don't understand her point. OP doesn't seem to want to be seen in the same class of kids as SN kids so PP is pointing out that, in fact, her kid does have SN. Because you know, medical SN are a better class of SN than developmental ones. Gosh, you don't want to be mistaken for one of those kids.

You need to grow a thicker skin and not take offense when none are intended. Nowhere does OP indicate that medical SNs are a "better class" than developmental ones just that her kid has medical SNs which is a fact.

- signed mom of kid with developmental delays.

Different poster. When a mom comes on this board and says:

SWS is so rare and I get excited to know of a person with SWS who says something like "I never considered having SWS as having special needs at least for me." I hope my dd grows up with the same attitude!

I think that by definition she is pretty much taking a dump on the entire notion of special needs. So yes, offense taken here.

I am the PP who has SWS. I've lived with it my whole life and I never considered it to be SNs for me. So having that attitude is "taking a dump on the entire notion of special needs"? Maybe you'll feel better if I wallowed in my disability and felt sorry for myself?

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:You don't understand her point. OP doesn't seem to want to be seen in the same class of kids as SN kids so PP is pointing out that, in fact, her kid does have SN. Because you know, medical SN are a better class of SN than developmental ones. Gosh, you don't want to be mistaken for one of those kids.

You need to grow a thicker skin and not take offense when none are intended. Nowhere does OP indicate that medical SNs are a "better class" than developmental ones just that her kid has medical SNs which is a fact.

- signed mom of kid with developmental delays.

Different poster. When a mom comes on this board and says:

SWS is so rare and I get excited to know of a person with SWS who says something like "I never considered having SWS as having special needs at least for me." I hope my dd grows up with the same attitude!

I think that by definition she is pretty much taking a dump on the entire notion of special needs. So yes, offense taken here.

So we should make certain that our children say things like "sorry, I have problem X, I can't do that"? Or should we try to encourage them to say "even though I have X, there is nothing I can't do if I want to figure it out"?

Apples and oranges. Encouraging your children to have a positive attitude is totally different from encouraging your children to believe that a syndrome isn't a special need.

But the daughter has a syndrome. SWS to be precise. It can express itself in any number of ways, including physical and cognitive delays of various sorts. The lawyer with SWS said that she has had it, and has led a happy and healthy life, the OP said "great!" - and somehow that's offensive? We should avoid finding the positive elements in our lives? We should not hold out people like Chris Burke, Stephen Hawking, or Hugo Weaving as exemplar for our children whatever their disabilities might be?

Here's the thing for me.

It's great to have a positive attitude and believe that nothing should hold your child back.

It's questionable to hope that your child should be unaffected by a medical syndrome. What happens if your child's port wine stain cannot be erased? If your child starts having seizures? If she is, in fact, cognitively impacted?

Does she have to deal with your disappointment? With your constant failed expectations for her? With your unrealistic hopes and dreams? When does she get accepted as a person who is, in fact, acceptable?

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:You don't understand her point. OP doesn't seem to want to be seen in the same class of kids as SN kids so PP is pointing out that, in fact, her kid does have SN. Because you know, medical SN are a better class of SN than developmental ones. Gosh, you don't want to be mistaken for one of those kids.

You need to grow a thicker skin and not take offense when none are intended. Nowhere does OP indicate that medical SNs are a "better class" than developmental ones just that her kid has medical SNs which is a fact.

- signed mom of kid with developmental delays.

Different poster. When a mom comes on this board and says:

SWS is so rare and I get excited to know of a person with SWS who says something like "I never considered having SWS as having special needs at least for me." I hope my dd grows up with the same attitude!

I think that by definition she is pretty much taking a dump on the entire notion of special needs. So yes, offense taken here.

So we should make certain that our children say things like "sorry, I have problem X, I can't do that"? Or should we try to encourage them to say "even though I have X, there is nothing I can't do if I want to figure it out"?

Apples and oranges. Encouraging your children to have a positive attitude is totally different from encouraging your children to believe that a syndrome isn't a special need.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:You don't understand her point. OP doesn't seem to want to be seen in the same class of kids as SN kids so PP is pointing out that, in fact, her kid does have SN. Because you know, medical SN are a better class of SN than developmental ones. Gosh, you don't want to be mistaken for one of those kids.

You need to grow a thicker skin and not take offense when none are intended. Nowhere does OP indicate that medical SNs are a "better class" than developmental ones just that her kid has medical SNs which is a fact.

- signed mom of kid with developmental delays.

Different poster. When a mom comes on this board and says:

SWS is so rare and I get excited to know of a person with SWS who says something like "I never considered having SWS as having special needs at least for me." I hope my dd grows up with the same attitude!

I think that by definition she is pretty much taking a dump on the entire notion of special needs. So yes, offense taken here.

So we should make certain that our children say things like "sorry, I have problem X, I can't do that"? Or should we try to encourage them to say "even though I have X, there is nothing I can't do if I want to figure it out"?

Anonymous wrote:

Anonymous wrote:You don't understand her point. OP doesn't seem to want to be seen in the same class of kids as SN kids so PP is pointing out that, in fact, her kid does have SN. Because you know, medical SN are a better class of SN than developmental ones. Gosh, you don't want to be mistaken for one of those kids.

You need to grow a thicker skin and not take offense when none are intended. Nowhere does OP indicate that medical SNs are a "better class" than developmental ones just that her kid has medical SNs which is a fact.

- signed mom of kid with developmental delays.

Different poster. When a mom comes on this board and says:

SWS is so rare and I get excited to know of a person with SWS who says something like "I never considered having SWS as having special needs at least for me." I hope my dd grows up with the same attitude!

I think that by definition she is pretty much taking a dump on the entire notion of special needs. So yes, offense taken here.

Anonymous wrote:You don't understand her point. OP doesn't seem to want to be seen in the same class of kids as SN kids so PP is pointing out that, in fact, her kid does have SN. Because you know, medical SN are a better class of SN than developmental ones. Gosh, you don't want to be mistaken for one of those kids.

You need to grow a thicker skin and not take offense when none are intended. Nowhere does OP indicate that medical SNs are a "better class" than developmental ones just that her kid has medical SNs which is a fact.

- signed mom of kid with developmental delays.

You don't understand her point. OP doesn't seem to want to be seen in the same class of kids as SN kids so PP is pointing out that, in fact, her kid does have SN. Because you know, medical SN are a better class of SN than developmental ones. Gosh, you don't want to be mistaken for one of those kids.

Anonymous wrote:OP, if you feel your child only has medical needs and not special needs, why not post in the Health Forum? Because this is the Special Needs forum.

Really? You think someone who has a child with Sturge Weber does not belong in this forum looking for support? Since when did medical needs not qualify as Special Needs?

https://en.m.wikipedia.org/wiki/Sturge%E2%80%93Weber_syndrome

16:11 here -- sorry my sarcasm wasn't obvious enough. OP is posting in the right place.

Anonymous wrote:

Anonymous wrote:OP, if you feel your child only has medical needs and not special needs, why not post in the Health Forum? Because this is the Special Needs forum.

Right. This board is for ADHD or ASD only.

Really? I suppose you should tell the CP mom that. Or if there are other parents whose children required ACM, DAFOs, or G-Tubes for their children, where do they post? If I'm worried about PANDAS, or wondering if my child required a KD for something, where do I ask?

If my child is going in for an MRI, or an EEG at CNMC or KKI, where should I turn for some advice?

(If you don't know what those acronyms mean, feel free to look them up in the *Sticky Post* for this forum: http://www.dcurbanmom.com/jforum/posts/list/166433.page)

Sorry if the OP's topic didn't fit into your entitled, white, suburban definitions of "special". If you don't have anything to contribute why are you seeking out someone to yell at? Are you just invested in having the "right" kind of special needs child, and other peoples' concerns aren't legitimate?

Anonymous wrote:OP, if you feel your child only has medical needs and not special needs, why not post in the Health Forum? Because this is the Special Needs forum.

Right. This board is for ADHD or ASD only.

OP, if you feel your child only has medical needs and not special needs, why not post in the Health Forum? Because this is the Special Needs forum.